I hate to be so descriptive

Well, not really....that smell, the one I keep saying is coming from my fair child's mouth/nose. The smell that I can only compare to like a dead critter smell, sorry...but it's true. It's normal. That is truly disturbing to me. It doesn't seem possible that a living breathing person should have that emminating from their body. ugh.



Puking continues and since I started this post last night, today I'm feeling freshly discouraged. I should not complain, there are so many "worse" things that could be happening, but my goodness, she does need nutrition to be able to heal and grow and get healthy. I cannot understand why we are having this never ending pukefest. Is this a part of chromosome problems and why does it happen in waves??? I'm so burdened. A day has not gone by since mid march that she has not puked at every bolus feeding. I want to cry, I want to be upset, I want to lash out.....ITS NOT FAIR FOR HER. Hasn't she been through enough. She's GOT to be tired and I know I am. I'm not talking spit up here, I'm talking full on vomit til its gone.



On a slightly less depressing note....she is having so much fun today throwing new bags of socks all around the living room. What a nut.

No pain meds, you know the good ones...

We officially ran out of pain meds for Lillian last night. I gave her the last dose at like two or three this morning. The smell is still there. I did call the surgeon today just to check if that was normal and am waiting to hear back. She seems to be doing well overall except for the dreaded feeds. Ugh....it wears me down, seriously, I cannot even imagine the toll it has on her. I hate to puke...I cannot imagine puking EVERY SINGLE time I ate. blech

Interesting enough, got a letter in the mail today from Riley surgery notifying me that her surgeon would be out of town the week following her surgery and if that concerned us we should call their office to reschedule....are you kidding me??? I took this opportunity to call and tell them we were no longer in need of their service.

She is completely obsessed with going outside. She thinks she should be out there if anyone is out there. Let me tell you how much that annoys the girls. They have a little tolerance for messing with her outside, but it quickly runs into "their" time. I took little missy for a walk today and we went to see the goats, but they were not in the field. (friendliest bunch of goats you've ever seen)

Another new experience today, Lillian pulled the Wizard of Oz DVD out of a box and kept shaking it at me and pointing to the TV. I put it in, quite shocked bc she is really not too much a tv watcher. She did get interested in it, as much as a two year old is anyway. Then tonight, she did it to me again...I said are you serious??? She shook her head yes at me very slowly several times as if to say, did I stutter??? It was funny.

I spoke to a friend who is a speech path today and she told me that most kids have to have multiple surgeries on the palate....UGH.....that was depressing information. Sometimes I wish they would just tell us these things up front so I'm aware of it. So it doesn't feel like a bomb landing on me. I have felt like that many times with her. For instance, the time she had blood come out of her trach...I was buggin'. When I called they were like so nonchalant, oh yeah, that's normal. Don't you think you might ought to tell a parent, that someday blood may come out of her trach...it's not a big deal, it's expected...do they tell you that in training....NOOOOOOO.

I feel heavy hearted today. One day at a time...

hmmm

I'd like to say things are going fabulous, but they are not, don't get me wrong she's not horrible or anything, or maybe I just don't know what's "normal".

It has become evident that pain medicine only holds her through the night for about four hours. Every night she wakens just before three crying and usually bleeding and it takes me a good hour to get her back to sleep. Her feedings are going HORR-IBLE. Yesterday, I just went straight to pedialyte. Today, we are trying to cut down her volume and slowly slowly slowly work back up. The smell coming from her is atrocious, Matt says it's my bionic nose.....but the kids smell it too. Oh, well, vomit + blood + mouth bacteria= nasty nasty smell. What should I expect. Holla back if you have ANY experience in this avenue. Any long lasting crying/coughing/vomiting causes bleeding. We assume this is from the existing hole. I was going to show the drawings on here, but I can't seem to find what I did with them.

So, the hospital experience....I couldn't really give you any specifics of comparisons, except they validate parking...lol. The nurses we had experience with were extremely kind. There were difference with treatments and such and I think they are a little farther along on computerized charting. They had alot more going on in the evening hours for kids and you NEVER see that at Riley. We had a child life specialist come see her in the evening hours. And, have I mentioned that I enjoyed not talking to this student and that student and so on and so on. When I told them what formula Lillian was on, they didn't blink an eye....(Riley had some trouble with that and they are the ones who ordered it for her) They had her meds, oral nexium (which I was told is not available at Riley) The only bad thing I can really come up with, is they weren't very quick to call lights. I mean they answered right away, but sometimes it would take some time for the nurse to come. That will be on my survey as the only negative. I'm not sure, but I think all their rooms are private. WITH Bathrooms! It will be interesting to see how things evolve as we explore this new environment. ANY time a lead came off or a monitor alarmed they called into the room. This was nice but did become annoying at times. Though I don't know that it's altogether a negative experience. Parents are also able to purchase meal tickets in the gift shop and are able to get items off the "munch mobile" when it comes to the floors. They were also ready/willing and able when I wanted someone to sit with her a minute to get some lunch. (she's an onery girl taking out her IV and pulling off her splints, a bad thing when you want nothing in her mouth) Bottom line, I'm happy and feeling more confident each day in our decision.

I'm a sick woman....

Ok, I should officially be considered MOTY bc I thought it was funny how my child reacted when placed on versed...and sickest yet, I'm posting it for everyone to see. I'll apologize now because I am not smart enough to get it turned the right way...it was a cell phone video. This video is still not as funny as she was in the beginning. She was smiling and seeing the purple elephants....FUNNY.

This is a picture of her....

This is what you see when you come off the elevator and I didn't realize it (probably bc I was a nervous wreck and I only had two hours sleep) but the pastor pointed out her name on the board.


To give a brief synopsis, I did like the hospital, I felt the doctor was extremely caring. I liked not having to deal with 10 different residents/students before we actually got down to brass tacs. Don't get me wrong, it was different...a lot different from a nursing care standpoint....but I'm very comfortable moving her care there. She was in a private room in a quite quad and all the nurses were very caring. I feel we are and have made the right decisions. Now, the road to decannulation begins!!!

Today, Lillian has been pretty fussy off and on, but overall doing well.

Thank you for continued prayer and support!!

There's no place like home

We've clicked our ruby slippers and we're home and happy. Last night about midnight she really woke up and was acting much better. Today, she is almost back to herself. You can tell it hurts her to cough...imagine that. This is also the first time she's experienced barfing without it coming up her nose. She is acting very tired, I think she might just have over done it a little today...

The nurse came in the morning and removed her dressing, which wasn't terribly pleasant, but not as bad as I thought it would be. She has some bleeding afterward but not too much. They wanted us to stay for the day to make sure no more started. The doctor was so concerned, he came back and made a special visit to see her today bc he said he just couldn't get her off his mind. His nurse also called every two hours to check on her.

She, of course, charmed EVERYONE today.

There is more to tell, but I've literally only been home about half an hour. I'll post more later and also share our versed video and a drawing for some understanding of the hole in her mouth.

Today was my Grandma's funeral that I was not able to attend and I just need some time to process and grieve, but I think that is on the backburner for the time. Thank you for all your comments and ecspecially your prayers!!!

P-day

Oh my goodness. It has been a difficult day. The surgery went pretty well as expected. Her ears looked fine too. They were not able to close the entire palate, so there is a small whole inside under sewn tissue (diificult to explain) that is oozing. She came up from surgery, swollen like I was not expecting. She is in a great deal of pain and was bleeding quite a bit more than anticipated. The doctor would like to keep her as calm and pain controlled as possible.

PTL this surgery is done, but oh, my poor baby is miserable.

I will tell you, I did allow them to give her versed to calm her before taking her back and friends, that was darn right hilarious. She was definitely trippin'. I will have a video to come....

We wound up having to be here even earlier than we expected so I got a grand total of two and half hours sleep. It is a little scary to be here since they aren't familiar with her, but so far I think she is in capable hands.

I feel it will be a long night. Thank you for your continued prayers and support.

T minus 1 to P-day

Tomorrow is the big day. Today we make a trip to the Ped. to make sure she is all clear from a respiratory status. Much left to do to prepare. I probably won't be able to post again until I return home.

To complicate things just a tiny bit, my Grandmother passed away Sunday morning, please pray for our family. This was a very unexpected loss and will be hard on the family.

One day and the steps to decannulation begin. My nerves are shot.

Do you think? 3 Days

Do you think if I don't write about the fact that Lillian spiked a fever two nights ago that it won't matter??? Do you think if I don't write that she puked her entire last feeding that it won't make a difference? Um-no, notsomuch, but it did. I truly believe this is all linked to her ears or perhaps teething?? *wink wink* Let's just go with that shall we?

The KY trip was fine. We actually spent more time driving there and back than the actual appt. They basically asked history and were very concerned with getting her last cardiology report. Everyone there was uber-friendly, my sister thinks it was just good old southern hospitality. Maybe...or maybe they just care. The surgery waiting room was PACKED. I could not believe it and I SO did not want to have to sit in there with Lil, but I didn't have a choice. They said it was unusually busy for them that day. I doubt there will be that many on surgery day, let's call it P-day just for fun. Get it? On P-day we have to be there at 0630, translates to leaving our house at o'dark hundred. Believe it or not, I think we actually have everything lined up for the girls. Have I mentioned I have super good friends? I just need to get a lasagna made for supper that night. I will be spending the night there with her and they are going to try to pull and ENT into the surgery to take a look at those ear tubes. Fingers crossed. 3 Days. 3 short days. This most pleasant visit also makes me feel really good about transferring her care. I need to do some research into getting that going as well.

Our move is officially official. We are in need of some financial blessings in that respect as well, so if you could remember that in your prayers I'd really appreciate it.

Thank you for you prayers and comments, it really means a lot to me.

In the Little Room....5 Days

Tomorrow we head to KY for a preop visit with anesthesia. Never been to one of those before, so it will be a new experience. I hope they don't need anything besides my brain power. (That makes me laugh just typing and rereading it.) My sleep is fitful and full of dreams of surgery. Not necessarily bad dreams just unorganized surgery dreams. Hmph. Last night I couldn't help but think back to the beginning. Some days it feels like nothing really has changed. Still waiting and watching.

It has been my experience, having worked in healthcare, that it is never "good" to be taken to the little room. You know, the room where they take a family in the ER when a patient has died or the news is so grave they want you isolated. It's the same way in the NICU. They encourage you, or they did us at least, to keep a diary of our stay there. While I am a journal-er, I just couldn't bring myself to rehash everything in my room alone each night. I didn't want to be able to go back and look on paper how distraught I was. How alone. So, instead, I wrote letters to Lillian. I'm a little unsure about sharing this, but hey, take a leap....here is the letter I wrote the day things started taking a talespin.

Shorty after she returned from the sleep study, she began to show signs of distress, by seven or eight oclock she was back on a vent and still teetering. Matt and I stayed with her until a relatively good blood gas came back. It was the first night I went home. Although they procured a room for me, I just could not bear the thought of staying alone. Coming home, how painful. The first time to step into her room that my sister and kids lovingly prepared. The emotion of wondering if Lillian would ever even get to enjoy her sweet little bassinet and all her precious clothes neatly folded in her drawer or wear the diapers that lay stacked in the diaper stacker. It was just overwhelmingly difficult. We headed back up to Riley the next day only to be met at the bedside by the doctors telling us we needed to "sit down and talk". Enter, the little room. I so clearly remember the team-head doc, nurse practitioner, social worker, Lillian's nurse and maybe two other people. It is true what they say about hearing a pin drop. Everyone sat quietly as the doctor unloaded the situation. It was like air raid sirens. Like the bombs dropping one at a time. Initially I tried to write things down, but soon was just too overcome. I kept looking from the doctor to Matt. I remember there were few words afterwards...like "what can we do to help you" and "do you have any questions" and then they all filed out so quickly it was almost like a cartoon. We were alone and I think it was a moment before I realized Matt was crying with his head in his hands. We took turns like that for some time. Trying to fathom how we would talk to the kids and just soaking in everything we had heard, heart surgery, tracheostomy, mortality rate....chromosome problems. I'm not sure how long we were in the little room. I guess it was a while. The next thing I know the nurse was back saying our pastor was there and as he entered we were freshly overcome. It was the man who had helped save our marriage and been there for us and continues to be there for us today, although we attend a different church. I think we told him what we knew and the first thing he did was open his Bible to Psalms 139 and he read to us. He prayed with us and comforted us in the little room. It was after he left that we were able to pull ourselves together to face what would come. A lot of things happened in the little room and I don't think I'll ever forget the little room.

Five more days and hopefully a lifetime of no more of the little room.

PS- puking continues, but some better.

How dare you cross your legs...6 Days

7 Days

Hello, yes, I'm having surgery in 1 week, can you believe it? I know. Gotta go, toys to throw around...sisters to annoy. Bye!

8 Days

8 Days and I'm scared. I'm anxious. I'm irrationally scared.

Palate repair means so much. I know it isn't a "major" thing such as heart surgery or brain surgery or something of that magnitude, but it doesn't help me to not be afraid. I do believe I've had quite enough of surgeries. I'm concerned that there are issues that will need further attention. Not to mention I've taken this crazy leap out of my comfort zone from the hospital I'm so familiar with into a place I've never even been before. I'm worried and I pray. Casting my cares upon my Lord. I guess I must not really give it to him or these feelings wouldn't remain.

I guess, though, that I'm probably "normal" (notice I put that word in quotes, as it is objectional) in my feelings as noone should ever have a comfort level with placing their child in the position of letting there child's breathing be controlled by a machine. That with surgery there are always inherent risks.

8 days and the wind of change begins.

10 days

Why is my Daddy mowing the grass without me????

11 Days

Passed out from her day of company.

12 Days

Here is a pretty blurry picture of Lillian doing a new skill we like to call kissy lips. Its the first time we've been able to get her to mimick putting her lips together.

Updates ----

Lillian's weight wasn't as bad as I thought it would be. She's at 21lbs. PTL. He's changing her prevacid to nexium, so we'll see how that goes.

Stupid Medicaid lost her paperwork AGAIN and I have to take her back in there to give them the documents for the THIRD time. You, know, she needs this additional insurance. I'm so disturbed that they've lost her birth certificate I don't know what to do or who to complain to.

She was quite the stinker during her therapies today. Not being cooperative and such. Rotten. God bless our DT. She brought me Rally's for lunch. I LOVE her for being so good to me!!I should just give her a 20.00 and see if she'll bring me lunch every Wednesday....what do you think Shelley???(btw, we forgot all about them wings.

I got her some interactive story book CD's on ebay and they came today, but it wasn't exactly what I was looking for. They are cute, but they won't go full screen and they are not as good as some of the other ones I've seen. I'm not sure how else to search them.....anybody else know what I'm talking about??

I thought I had a lot more to share, but right now my mind is just busy with so many things. So, I'll finish with this.....13 days to go....

Another peep who didn't make the last photo

14 Days

Lillian and her Peeps

15 days

16 Days

Fingers crossed, prayers lifted. I believe my plan of action is to take Lillian to the doctor tomorrow. Start her on any and all preventative medicactions, such as toby, ear drops, and anything else the Doctor will consent to. She needs this surgery desperately. Last night I had to turn up her oxygen. I don't know if she's got some plugs moving around in there because she seemed to be fluctuating a lot. She's napping right now and I have her hooked up to her monitor and she's holding a solid 93. Coughing continues which I think insights most of the puking, but not always. I almost hate to know what her weight is. Good bye 23 lbs. I know that for sure.

*breathes deeply*

Dear Lord, please place your all encompassing hands on Lillian's little body. Give her strength and good health to be able to endure her coming surgery. I know You and You alone can grant all these things I ask. Your faithful servant.....

WHY won't this PUKING stop????

Puke-fest continues at the Halcomb home. I just don't know what to do.....I guess I should be uber concerned, but since this is something we've dealt with from the get go, I'm not.

She is in a great mood and doesn't seem like she feels bad at all. We have had to throw in a few duo-nebs and have started giving her ear drops again, (although i don't know how much good they do) So frustrating. She had done so well before this last hospitalization. I will say, however, that she is not throwing up at all with her night drip. It's just so darn hard.